We can provide advice to researchers on issues such as informed consent, the research ethics process and the legal requirements for the sharing of data and samples. Our advice is based upon an understanding of the ethical and legal requirements for research, the UK’s research governance framework, and how this is enacted through the Health Research Authority (HRA) and its National Research Ethics Service (NRES). We find practical solutions to the challenges of particular research initiatives by working with researchers and consortia to anticipate the ethical, legal and regulatory challenges as they emerge in the course of research. This ensures that research is lawful, ethical and regulatory compliant. We also sit on advisory boards to enable our evidence based knowledge and experience to be incorporated into new projects and contexts.
Developing Best Practice
HeLEX combines academic insight with practical experience, building on many previous and ongoing projects to develop best practice in areas of cutting-edge science. We do this by being integrated in scientific projects, understanding their aims and dynamics from the inside, and both anticipating and responding to issues arising in the course of research. Our particular areas of specialisation include biobank governance and data sharing in genomics. We ‘follow the sample’ from patient participants and informed consent through to considerations of incidental findings and research outcomes. Along that trajectory, we manage and enhance consortia, build appropriate structures and relevant, adaptive governance, and engage with patients and the public. Through our innovative approaches and practical focus on solutions, we aim to set new standards for practice, which can then be shared through our international networks of expertise and disseminated through our program of academic publication.
We ensure that our advice and policy work draws on our high quality and well regarded academic scholarship. This analysis or ‘thought for action’ underpins our advice and policy work with scientists leading to innovative scientific research done to the highest ethical and legal standards. We also draw on our extensive experience in previous projects and our knowledge of emerging best practice in the field. We complete the circle with thought on action; feeding back analysis and insights into current projects and carrying them forward through contributions to the academic literature and other projects. By being embedded in scientific research, we enact ELSI in practice. This forms the basis of our own research outputs, which contribute to our disciplinary base, are reinvested in current initiatives, and set the groundwork for future ones.